Thursday, April 22, 2010

Welcome Hailey's Hope!

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We are very excited to welcome another Local Project, Hailey's Hope to Project Sweet Peas! Hailey's Hope donates bags to the Children's Hospital of Alabama. For more information on Hailey's Hope, please contact Kristin at Here is Hailey's Story . . .

My husband and I were 24 years old and had been married for a year and half when we start our family (January 2009). At the end of March a home pregnancy test confirmed that we were pregnant. When I was 12 weeks pregnant, I had a Nuchal Translucency Screening done. This particular screening identified the baby’s risk of having a chromosomal disorder, the most common being Trisomy 21 or Down Syndrome. Even though our pregnancy had no risk associated with it, I went ahead and had the screening done. The ultrasound suggested our baby might be at risk because she had more fluid than normal behind her head. However, the bloodwork came back normal, so we were told that our baby would be just fine.

The rest of the pregnancy continued smoothly without complications. Everything looked good. We were so excited when we learned we were having a girl. We had several baby showers and decorated her room. We did everything we could to get ready for her much anticipated arrival. I felt confident that we would have a healthy baby especially because we ourselves were so young and healthy, but in the back of my mind was always the thought that there could be something wrong with Hailey.

There were no complications other than my high blood pressure (which is normal for many pregnant women) the week before Hailey was born. On December 1, 2009, when I was 39 weeks and a 3 days along, my water broke after being induced for 2 days. Hailey arrived at 6:04pm. After I delivered Hailey I waited to hear what all parents want to hear, the beautiful sound of a crying baby – and I got it. However, I knew something was wrong when she wasn’t placed on my chest, and no one was telling me what was going on. Hailey was rushed off to the NICU before I even saw her.

Eventually I learned that it appeared as though Hailey’s intestines were on the outside of her body (gastroschisis) and physically there were some other things wrong with her. They told me that she had to be flown to another hospital that had a level 3 NICU that had the capabilities of taking care of a baby like Hailey. I was able to see Hailey while waiting for the jet to arrive that was going to transport her. She had countless tubes attached to her and a huge bandage over her stomach. She clearly did not look like a ‘normal’ or ‘healthy’ baby. It hurt to see my baby like that, but despite everything, she was beautiful. When the rescue team arrived, they let me hold her before taking her. I wasn’t sure if I was ever going to have that moment with her, and I am forever thankful for that opportunity.

The next day I was discharged from the hospital and made the 5 hour drive to join my husband and daughter at The Children's Hospital. When I arrived Hailey was in the NICU recovering from the surgery she had the night before (the doctors placed her intestines back inside of her). Josh and I had many briefings by many doctors while we were there. To keep a complicated story simple, Hailey had many health issues, the most prevalent being apnea, which meant she would stop breathing. Many of the issues and several of her physical traits suggested that she might have a genetic disorder.

To determine a diagnosis for Hailey, the doctors ran a FISH (Fluorescence In Situ Hybridization) test. By the time the results came back a few days had passed. Right before Hailey was to undergo a second surgery, the doctors told us that results had come back showing that Hailey had full Trisomy 18, a lethal genetic disorder—lethal meaning that she was going to die. It was untreatable and incurable. They explained that Hailey had three copies of the 18th chromosome instead of the normal two in every single cell of her body. This prevented her body from functioning and developing correctly. The doctors didn’t know how much time she’d have with us. They explained that it could be hours, days, weeks, maybe months at best. We were in shock when we learned this... We went into one hospital to deliver our baby and expected to be at home with her at this point. Instead we were in a NICU learning our baby was going to die.

After having some time to ourselves to process the information, the nurses and doctors met with us again to discuss the next course of action for Hailey. We made the decision that the quality of Hailey’s life was more important than the quantity of days she lived. We wanted to make the most of her time here on Earth and didn’t want her attached to tubes and machines for who knows how long as that was not the kind of life we wanted her to live. Therefore, we made the difficult decision to not go through with the surgery and to stop medical interventions.
A few hours later we were moved to a private room in the hospital, and we were able to have all of our family members with us as well. We were able to hold her, give her kisses, dress her in her clothes, and I was able to work on feeding her bottles of my breast milk. She had an oxygen tube to help her breathe if she needed it, and she had an IV for fluids and nutrients until she was able to take enough of the bottle on her own. Also, she was off of morphine unless we felt like she needed it for pain. We made sure she was held every minute, and she literally was held in someone’s arms for almost a week straight.

A few days passed, and Hailey reached the many milestones she needed to so that we could take her home: she was bottle feeding well, off of her IV, having healthy diapers, and hadn’t had any more breathing attacks. After being in the hospital with Hailey for eight days, we were finally able to bring her home.

When we learned that Hailey had a lethal genetic disorder, our hearts broke, and we were in shock. Everything moved so quickly. The future for Hailey looked pretty dark. We learned more and more about Trisomy 18 by doing our own research online. We learned that Hailey’s birth was a miracle since most babies with Trisomy 18 don’t make to term or don’t survive birth. We also learned that most babies with Trisomy 18 who survive birth don’t make it out of a NICU or the hospital. The fact that Hailey was able to do so well and come home with us was a huge blessing from God.

When we were home with Hailey we had many visitors, and we made many memories with her – car rides in her car seat, a walk outside in her stroller, Birthday parties, baths, reading books to her, singing to her, dancing with her, showing her Christmas lights and the Christmas tree, etc. I made sure she smelled the smell of flowers and felt different textures. I ran her hands along my face, across our dog’s fur, across her stuffed giraffe. Her daddy wiped her chocolate birthday cake on her fingers and face. We covered her in kisses – Eskimo and butterfly included.

One week with Hailey turned to two weeks, and weeks turned to one month – what miracles and blessings from God. On her 5 week birthday Hailey got a fever (most likely a result of an infection, which the doctors explained would likely be the cause of her death). We brought her in to her pediatrician that day and she had been doing so well that I felt like it wasn’t her time yet.

Hailey remained a fighter until the very end. The next day, January 6, when Hailey was 36 days old, God decided to call her home, and He did it just as I had prayed. I had prayed that her death would not be painful or ‘ugly.’ I prayed that she would pass away peacefully in the night while she slept and that morning we woke up to find that she had passed peacefully while we were all sleeping.

Of course we were devastated to lose her, and yes I wish she had been a healthy normal baby, but she wasn’t…and that’s okay. She was created how God wanted her to be created. I never imagined that she could be as amazing as she was since she was so sick, but she was amazing and she was the best baby and daughter I could have asked for. She brought me so much joy my heart overflows, even after her death when my heart is broken and she’s not here, the memories I have of her make my heart overflow with joy. She was simply awesome.

Through Hailey's Hope, we want others to see that there are sources of light and hope even amidst the seemingly "dark" situation of a baby being in a NICU. We want Hailey's memory and life to impact others for the better and help others see that all life is precious and matters. Last but certainly not least, while being in a NICU is extremely difficult, we felt blessed and well taken care of by the workers and volunteers at The Children's Hospital; therefore, we would love nothing more than to give back to them and other families who share the experience of having a child in a NICU.


I just wanted to say thank you for the time and effort you spent getting the gift bags together. I am a nurse in the NICU at Childrens Hospital of Alabama and I was so excited the night I found the gift bags, I was like a kid in a candy store. Both of my babies that night got a gift bag. I made their hand and foot prints with the kit and dressed them in their new outfits and they had beautiful beds with their new blankets. Thank you for your time and generosity.

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